Moncheyne

[MONIREN]

I have been diagnosed with FND after a couple of years of tests. I have relatively mild symptoms, I walk like I'm drunk, one leg goes East the other west. I have full body jerks, which people find alarming. Now losing fine motor skills, like holding knife to chop vegetables, or balancing the food to get to my mouth. Neurologist did suggest putting me into rehab, but I have a sick husband and live in a regional area where rehab not possible. He insisted that I continue driving as long as possible. I'm 65yrs old female. I have constant problems with clots in my heart, is it possible that this is linked. That started 9 yrs ago, FND 4 yrs ago. I have great cholesterol and low blood pressure but I'm a diabetic on injections last 20yrs. Don't know how much longer I can live independently. Would like some suggestions. Moni

[christopher_cms]

moni ... what kind of doctor diagnosed you ?

[MONIREN in reply to christopher_cms]

Neurologist, I had MRI, brain scans, everything came back negative. This was the second one I saw, first said I was depressed. It was basically nothing else it could be as there is no test to prove it, from what the neurologist said.

[christopher_cms in reply to MONIREN]

i think there are all types of FND ... a neurologist who is a movement disorders specialist can tell you if it's functional dystonia ... as i understand FND, it's anything neurological which has no explanation ... so it's a catch-all for neurological problems

[eviedotty in reply to christopher_cms]

thats what I understand it to be but have been told I have FND am presently disputing the diagnosis due to 3 cavernomas on my brain which is the cause of my symptoms and so I have a medically evidenced with MRI scans diagnosis. I attend the dystonia clinic and also I am a patient with Neurosurgery to monitor the cavernomas but they are demanding that I accept FND and it is now causing major problems with my general care as the dystonia does have potentially fatal complications and so just cant be downgraded to nothing known about this its too dangerous... by complications I do mean that I am a frequent flyer with the arrest team at times and couldnt even get a corona virus test bcs I was deemed too high risk to be at the centre as it had only been 2/3 weeks since I had a code blue called on me at the appt for an MRI scan

[christopher_cms in reply to eviedotty]

dystonia is not life-threatening ... it compromises quality of life, but you won't die from it ... if they are saying your disability is due to your cavernomas. then it's not functional ... functional implies you don't know the cause ... makes no sense to me

[eviedotty in reply to christopher_cms]

you dont die from dystonia but the complications when it goes into the chest wall intercostal muscles, diaphragm, laryngospasm then its a code blue and an arrest team that attends to you...called the complications of dystonia and on one ocassion I had my family called up to the hospital at 7am when the arrest team were struggling to get my respiratory muscles going again...my address is red flagged for the ambulance service and my medical records have a red alert on them to direct staff straight to the care plan and 9 times out of 10 I will be attended to in resus so its challenging to say the least but the words used with respiratory and cardiac distress are medically potentially life threatening and trust me its not something you want to experience twice...

[christopher_cms in reply to eviedotty]

hi evie ... good point ... i hope you get better

[eviedotty in reply to christopher_cms]

you are right though normally speaking you dont die from straight forward dystonia but some people have end spectrum severe generalised and cant tolerate the drugs...my care plan now comes from America and I had a really tough time getting the care plan approved as the meds are being used off license here in Scotland...but you can buy them over the counter the whole thing is crazy....the worse attack I had was in my sleep and I was living alone at the time...I woke up thinking someone had broke in and was in my bedroom with their hands round my throat and it took a few seconds to recognise what was happening...well in between the spasms I have never moved so fast in my life...downstairs...lights on ...door unlocked lights on outside shoes coat and phone to call the ambulance all at the same time before the next spasm hit...... the call handler stayed on the phone with me till the crew arrived and one looked at the other and said jesus have you ever seen anything like this in your life...they were so good to this day I swear they were not even paramedics but angels sent from heaven dressed as paramedics and my airways were managed all the way to hospital for the first time with lights and sirens all the way to resus.

It will drop the oxygen levels...the lowest mine has registered is 76% and I was already in the a& e Dept with that one...the blood pressure cant be taken as dystonic seizures come with this due to lack of oxygen and the strain on my lungs and heart...my pulse rate has been measured at over 200 bpm which is too high for the pulsometer or so I was told at the time.

The last time I had an attack was the first time my laryngospasms were involved and that was march this year...am in a scan for a spine MRI scan ...could feel the spasms building up in the machine so bad I thought a bone was going to break in my foot...I came out the machine exploded into a dystonic storm...the member of staff that had taken responsibility for my rescue meds and the story...good call as it goes...got me sorted and I was so fine I should have been able to put my coat on and leave...was taken through to transport to wait for my lift home...having a lovely cuppa with other ladies and a nice wee chat then wham my lungs went down again...the scan room staff arrived then a nurse arrived and quickly the nurse in charge of us bless her she was 72 yrs old decided more help was needed and by the time I came to I was in another room with a paramedic crew waiting I thought they were the transport to take me home...nope they were on standby to take me to Intensive care...so treatment plan implemented and was handed over to the paramedics who never left me till the transport people came and they were fab as well got me home my wheelchair put away made me a cup of tea and asked if there was anyone they could call for me.

And now all these stories and many many more are being seen as FND...so am disputing it bcs by the time a medical team fusses about am unconscious and cant fight for myself....another time and I cant believe I did this the out of hours decided that I needed to go to hospital...now they have done this in the past and I disagreed with them and long story short the police became involved so this time I just said ok ...put the phone down called 999 and tried to cancel the ambulance as I was too tired and was going to bed...my lovely said the voice your call just got upgraded to a code red...paramedics arrived I was in and out of consciousness and confused telling them I was keeping them from their work etc and again ,long story short went in the ambulance just to shut them up and by the time I got to hospital I was fully unconscious...at some point the paramedics came to see me before they went back out and said...well was this a good decision or not and for future knowledge she laughed and said ...I never left a house yet without my patient and we had a laugh about it... but I could write a book on the trips to hospital alone am 20 years in and now being forced to accept this is FND but its caused by a cavernomas in my brain

sorry if this is a rant ....I just wanted to give you a flavour of what generalised dystonia looks like take good care of you and thank you for your kind words God Bless...xx

[christopher_cms in reply to eviedotty]

thanks evie ... sorry you are going through all this and hope you are feeling better

[MONIREN in reply to eviedotty]

That must be so frustrating, insurance companies will try to get out of responsibility. But with your MRI results and documentation of hospital visits, your doctor should be able to write to them. It is known that trauma can bring on FND. I hope you get it resolved.